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Archive for February, 2012

The week began as most weeks begin. My weekly visit from my home health nurse. Everything went without a hitch. The picc line dresssing was changed. My weight is stable -219 pounds,  my fasting blood glucose is less that 120, and all things considered, I was feeling good. The week passed – mostly uneventfully. There was that one thing about actually GETTING LISTED FOR A HEART TRANSPLANT on Thursday, but all things considered, it was a quiet, uneventful week. Oh, I was approved for listing a couple days earlier, but I didn’t actually make it onto the list until Thursday.

All of a sudden, the real…reality of the situation hit us. Where was the phone? Our instincts were to hold on to the phones lest we miss the all important call. I am not sure why, perhaps it was the excitement or the anxiety of the situation, but I noticed a bit of chest pain. Not bad pain and not familiar pain. Do you know what it is like getting slugged? Not the moment of impact. A moment later. The muffled pain, not quite an ache that remains after getting hit. That is what I was feeling in my upper left chest. As it was not a crippling pain, and it seemed to come and go, I chose to ignore it. But the pain never disappeared. Oh it did for brief moments, but I noticed it hanging around more and more.

Finally, next Tuesday rolled around and the home health nurse was back. As always, the first question out of her mouth was ” How are you feeling Mr. Hayden”? At first I hesitated. Nurses do not like to hear that their patients are having “chest pain”. I felt that there was a better chance than not of being instructed to go to the emergency room.  I told her. At first she looked disapprovingly at me. I explained that if I went to the emergency room every time my chest hurt that I would have to move in.  My blood pressure had not changed. Nor had my breathing. I was a bit nausiated, but that could be a hundred things. She called the cardiologist and left a message. From there she changedd the picc line dressing, told me that she would call as soon as she talked to the cardiologist, and off she went.

About an hour later, I received a call from the cardiology nurse. The doctor wants me to come in for an EKG. They just want to be sure it is nothing serious. A patient in my condition…with chest pain…I am thinking, there is no way they will let me go. I am going to be sent to the intensive care unit.  Augh! A short while later, the ekg is accomplished, some blood is taken, and the doctor enters the room. He begins…(paraphrasing) he asks me about the stent that I had placed several months ago. We talk about it a bit. ( If you don’t remember, go back several months in this blog for details). He said that it may or may not be heart related. He thought that maybe, just maybe the re-stent of the artery is closing. It is a very small artery and we were told that closure could happen. Especially since I was now off of “Plavix”. He was not too concerned though. He said that even if the artery did occlude (close) that it was an insignificant artery that should not cause too many problems if it does close. “Besides”, he said We will be replacing you heart soon.

The conversation changed to the transplant. He said that he had already had two offers for new heart. He turned them down, considering them “Marginal Choices”. He felt confident that a good offer would happen sooner than later, although I must say here and now that there really is no way to predict how soon. Today, next month or next year. Know body really knows with any certainty. My panel-reactive antibody test was 0%. That means that I am least likely to reject a new heart. Not that I won’t, but people with a 0% have a tendency to do better. We are ready!

But getting ready takes some doing. First, you need to scope out the hotel that Denise will stay. Although we live in the same city as the hospital, it is on the other side of the city. I don’t want here to have to spent 12 hours straight in a hospital room. She needs to take breaks, do other things. But, I would obviously like to see her periodically through the day. Getting a hotel room nearby allows Denise to come and go through the day. It is stressful enough. She shouldn’t have to drive back and forth. We have to make arrangements for Bear. I need my children with Denise during the first 12 hours or so after I get called. They need to be there to support Denise, so someone needs to grab Bear and take care of him for a week or so.  We need to make sure all of the paper work is in order. The power of attorney, medical living will, stuff like that. We have all that stuff, but copies need to be in the right hands ahead of time. The less obvious things need tending to as well. It would be a tragedy if I get called for the transplant, but I have pneumonia. I would not be able to get the surgery. A dozen other ailments would equally squash the surgery. Both Denise and I must take extraordinary precautions to stay healthy. Those efforts are kind of like practice, as that how we will need to carry on after I return home from the transplant. Making sure the cars  (both of them) are in good working condition and gassed up at all times, a telephone tree set up so that we do not have to notify everyone ourselves, and of course my blog. I have already written the blog announcing the transplant. I will post it as I walk out the door. I have another one which I hope will not be used. It is titled “The Last Word”. My daughter will post it if the need arises.

I have so much more to share with you, but I see this blog is already getting long. Let me finish by saying this: Do not ever delay going to the emergency room. The rule of thumb is: if you are not sure, GO!. I didn’t because I have over 20 years of knowing the chest pains I get, and while I didn’t go, I did disclose the information to a health care provider, and did’t argue with them when they made up their minds about how to proceed. Always tell someone if you are not well. Always seek medical advice. Always better safe, than sorry.

Please tune in next week. Tons of stuff to talk about.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that know matter what -you do not give up. There IS hope.

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This will become one of the longest week’s I’ve ever endured. The reason – February 14th is the day my fate is decided. That is the day which ten or so people sitting around a table will decide whether I am a suitable candidate for a heart transplant. When I was told that the committee would meet on Valentine’s day, I imagined the symbolism. News of a new heart on the day everyone is giving their hearts to others. Yea. That sounded about right. By the time Friday rolled around, two years had already passes in my mind.

The week end was uneventful. I seem to have good control of my blood sugar now. I leveled off at 15 units of “Lantus”. Although it is called a “slow acting insulin”, it isn’t really insulin at all. Lantus is an artificial insulin that was invented by some really smart people.  In any case, it works for me. I am ready for the impending deluge of steroids that await me with the heart transplant.

My weight seems to be holding steady this week as well. I had lost nearly 10 pounds on my quest to drop at least 15 pounds for the surgery. Not too bad, considering I am losing weight without the benefit of exercise. I feel comfortable knowing that I am adjust ing to this weight, and it will begin to drop in the next week or so.

The weekend went off without a hitch. No runs to the emergency room, no midnight calls to the nurse. Yes, the weekend was fine, and so were the 400 days it felt like.

MONDAY!!!!! Only one more day to wait. That should only take about three months to pass. Come Tuesday morning, I began starring at the phone. Denise and I had some errands to run. Do we dare leave?  Of course we do…or should we stay?…aaGGHHH!!! Let’s go. OK…no…we need to stay…ok…but let’s just go to lunch. ..ok…ok let’s go…ok. We go. We arrived home around 2 pm. I was exhausted. We had been out of the house for seven weeks. The first thing I did was walk to the phone.  I look – and in a muffled voice I tell Denise that know one had called. I am going to take a nap. I awoke from my nap three days later, only to discover that no calls were received while I was sleeping. It is nearly 5 pm. Denise and I try to justify what is happening – maybe the group does not meet until after normal work hours? Perhaps we’ll get a call later this evening. We’ve received calls from them after 9 pm before. It could happen.  The evening waned on. No calls. Pardon the pun, but today was very disheartening. Very disappointing. I am going back to bed.

Three weeks later, Wednesday arrived. By 9 am I still had not heard from anyone. WTF? and I don’t mean Wed, Thurs, Fri.. I decide to call them and find out what is going on. The person who answers the phone is the scheduler. She is the one I was looking for. After the obligatory howdy do’s I ask, “So Buffy,  (Not her real name) what happened at the committee meeting? Can you fill me in on what happened at the committee meeting? I am just trying to find out what happened at the committee meeting?” “Sure”, she said. Paraphrasing. The meeting went very well. I was APPROVED for a heart transplant. They don’t notify the patients until all the necessary steps are taken.  For example. After the committee approves the transplant, a package must be submitted to the insurance companies. They need to sign off on it before I can be listed. She went on to tell me that the request had already been sent to the insurance company and they expect to hear back today. She went on to say that once I am listed, I would receive an official phone call and letter. She concluded by asking me to take a deep breath, relax and begin my preparations. I thanked her and hung up.

Denise was sitting next to me while I was talking. She got the jist of it, but I explained in detail what had been said. Listening to myself say that I will be listed in the next day or two was surreal. At first, there was merely a knot in my stomach. You know the kind. You  feel a twinge of nausea and your mouth begins to produce saliva. The muscles in your abdomen begin to tighten and it hurts, almost as if you were punched. We looked at eachother, and in that moment realized that it is finally going to happen. We have been waiting for this moment forr more that 20 years! Talking about it, almost in the third person for decades and now the time is upon us.

We are scared and excited at the same time. Not in a fun way, as if in line for a roller coaster. But, in a solemn, frightened way as the realization of what is about to happen sinks in. Someone is a step closer to death, but cannot see it coming yet. Another is just checking off the donor box on a new driver’s licence and has no idea that it will be used sooner, than later. Their friends, their families will be blind sided by what is about to happen to their loved ones, and all the while, Me, Denise and our friends and families are sitting in the bleachers waiting for it to happen. Happy, sad, terrified, mournful, thankful.

Next week I will finish telling you what it will take to prepare for the heart transplant. There is more to it than you might imagine.. Let me leave you with this thought: Being a donor may be the greatest gift, most noteworthy thing a person can do with their lives. Please say a prayer for all of the donors and their families.

For information on me, and my journey with heart disease, go to my web site.  http://www.brianhayden.com/

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Finally! A week with no real drama. Well, it was bound to happen sooner or later. Today, I would like to discuss some of the pro’s and cons of getting a heart transplant. “What”?!!, you say. How could there possibly be pro’s and cons. Isn’t getting a heart transplant one of those no-brainer – thank your lucky stars moments? Yes it is. BUT, it is not without its share of problems. One of the discussions doctors have with patients right from the beginning of the process is the discussion about exchanging one set of problems for another. Today, I am going to take you through my decision process. Just how did I decide to opt for the heart transplant?

Let’s begin by discussing the “pro’s”. It was really quite simple for me.  My heart is not benefiting from the CRT (cardiac re-synchronization therapy) provided by the bi-ventricular pace maker. Wow. That is a mouth full. For those who have been reading my blog for a while, you may have remembered reading about it. For everyone’s sake, I will briefly review.  Regular pace makers stimulate the heart in one spot. That triggers a heart beat.. Consider a boxer’s speed bag. If you take one finger and poke it, the bag will begin to sway because there is nothing on the other side to stop it. So too with my heart. The left ventricle is essentially dead. When my heart triggered a beat, the left side wouldn’t push back. My heart just began to sway like a pendulum and almost no blood left my heart. With CRT a two-phase pace maker is used (bi-ventricular). Wires are synchronized on both sides of my heart. That provides the “squeeze” or the “push back” my heart needs to pump blood. CRT worked for a few years. My heart is now too sick to get full effect from this therapy.

Medications that once worked to calm my heart and draw fluids off my system are likewise less effective. As a temporary measure, they installed the picc line and are dripping “Milrinone” directly into my heart.  This is helping, but the doctors say that it fixes nothing. It is a temporary step to keep me alive. There are only three options for me now. Heart transplant,  installation of a left ventricular assist device (LVAD) or die. I will not go into the LVAD, except to say look up the “Heart Mate II”. It is a wonderful life saving machine – that I respectfully declined. I cannot live my life with one of those. Chalk it up to a personal choice.

That leaves me now with only two options:  get a heart transplant, or die. I chose the heart transplant. So what are the pros and cons? Well, let’s do the pros first. I have about a 90% chance of living through the first year. That’s gotta be a plus in anybody’s book. As my body will be getting regular doses of oxygenated blood, I will at some point be able to do many more things than I can now. I will be able to play with Bear, my grandsons – and yes – close your ears children – Denise. ;>} I will be able to live, and do all of the things that most people take for granted. I love life, and I will be able to experience LIFE for what should be at least another five or ten years. That sounds wonderful, doesn’t it? It is, but it comes with a huge price tag.

The “cons”. Well for one thing, heart transplant surgery is no walk in the park. Despite the fact that it is a common surgery, it is wrought with danger. Would you do something that has a 10% chance of dying attached to it?  Another obsticle to deal with is rejection. Our natural body defenses will not like the idea of a foreigner taking up residence in my chest. My body’s first reaction will be to attack the unfamiliar organ. If I am to survive, the doctors must find a way to protect the new heart. They do this by “turning off” my immune system. It is not actually turned off, but it is dialed way back. That all sounds good, untill you consider that now any stray bacteria or virus I come in contact with can make me sick. Unable to fight the intruder, a simple cold or tooth decay could ring in my demise. So I must take incredible precautions. Particularly in the beginning. Later, as the medicines are reduced, the problem also diminish. However, all of those great drugs used to fight rejection will cause my shaking to worsen. My hand shakes. The doctor says it will worsen after the transplant. I may not be able to feed myself. Hell, I cannot feed myself sometimes now. It will require special utensils and weights to counter the shaking.  One way the doctors use to “dial down” my immune system is giving me high doses of steroids. This will make my diabetes worse, cause me to gain weight and causes a big list of other problems. The key to rejection is to survive the first year. Slowly my defenses will be dialed back up and I can begin to live a more normal life. Oh, did I mention that as a bonus, all of the teeth that are capped, crowned or are not in excellent condition must go. Yep, my teeth gotta go. The top ones left me 6 years ago. The bottoms are awaiting the executioner in the next couple of weeks.  Oh well. It is a small price to pay, no? But that is not all that is involved.

Denervation is a term I introduced you to a couple of weeks ago. Imagine if you will… a donor. They want to remove the heart. They cut all of the blood vessels and that’s it, right? Sadly, the answer is no. When you get excited, your heart beats faster. When you exercise or do a thousand other things, your heart adjusts to the situation.  It is the main connection between your brain and your heart. That nerve must be severed in order to remove the donor heart. And, unfortunately, there is no way in our medical technology to re-attach it in the recipient. My new heart will run independent of the central nervous system. Crazy, huh? It’s kind of complicated, so I retrieved some info from The Stanford Hospital to help explain.

According to Stanford University Hospital and Clinics:

Physiology – Effects of Denervation

The incisions in heart and combined heart and lung transplantation sever the sympathetic and parasympathetic nerves which ordinarily regulate your heart rate. This lack of neural connections is known as denervation.

Before your transplant, stimulation of the sympathetic nervous system would speed up your heart rate and the parasympathetic nervous system would slow your heart rate. Your new heart, without the direct control of your central nervous system, will beat faster in the resting state than did your own heart. These nerves rarely grow back.

The “resting rate” of a denervated heart usually ranges between 90 and 110 beats per minute. While this rate is faster than “normal,” it is associated with perfectly normal function and the capability to sustain vigorous physical activity.

Any change in the rate of your transplanted heart is dependent upon circulating adrenaline and related hormones produced by the adrenal gland. These will affect your heart rate through the circulatory system rather than by direct nerve action on the heart. The response is slower.

A response to stimulation causing increased adrenaline, such as exercise, may take up to 10 minutes “” until the heart’s pacemaker (the sinus node) picks up the message through the circulating blood rather than by direct electrical brain impulse. Conversely, the circulating hormones may take up to an hour to decline and allow the heart rate to return to its normal rate after exercise.

Another effect of denervation is that you may not perceive chest pain or angina pectoris should you develop coronary artery disease in your new heart. Chest pain that you may feel can be associated with lung and chest wall healing or strain due to exercise, rather than lack of blood supply to the heart.

So there you have it. Lots of things to consider before deciding on a heart transplant. Oh there are other things too, but we don’t have time to deal with them today. They are things related to post operative care, heart biopsies and support for the spouse and patient once we get home. For me, I have a good support system so I will leave it there.As for the other stuff, we’ll get into it when the time gets closer.

For me, it all came down to a choice. Deal with myriad problems associated with transplant, or life. When confronted with my options, I found that there really were no options. I choose life. Yea… life.


For information on me, and my journey with heart disease, go to my web site.  http://www.brianhayden.com/

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I expected this week to be filled with the typical drama; disappointment, scary life-threatening situations, and of course – test after test after test after test. Four times repeating myself? Yea. You get the point. Lots of tests were rushed to order and scheduled. We begin the chaos Friday morning. Denise and I awake at 5 A.M. to prepare for the trip across town. Methodist Heart hospital is Northwest  San Antonio and we live in the deep Southeast part of town. It had begun raining the evening before and traffic would be a bear.  The appointment is at 8:30. We left at 7. Not surprisingly, we arrived a bit early. We checked in, and waited. Around 9 a.m. a guy came around the corner, called my name and off I went.  Let’s see. Brain ct, chest ct, abdominal ct and pelvic ct. He said it wouldn’t take long.  By 9:15 A.M. Denise and I were heading out the door.  Next stop: the transplant office. Located conveniently in the next building over, it was close enough to walk back and forth if you were healthy. We drove.

By 9:30 we checked in, and waited. Around 10 ish they called us back. Denise goes in with every type of exam. If I am rendered incapable of making a decision,, she needs to know all the information I do.  She even went in with the shrink the previous week. The nurse comes in and they begin drawing blood. Lots of it. Maybe 8 or 9 vials. She then gives me these two one-gallon plastic buckets. “This is for your 24 hour urine capture”, she says. I couldn’t believe I could fill one up, let alone two. Just do what you can, she says.

We arrived home about noon and there was a message from the gastro doctor. The one that will do the colonoscopy on Monday.  They cannot get through to the pharmacy to deliver the prescription for the poop juice. So, after a couple of minutes, I find the number of another pharmacy and all is well.

Later that evening, we went to the pharmacy and picked up the stuff. It came with five pages of instructions. As I began reading, a sense of concern began to grip me.  There  in bold letters is a sign “Medicines to stop 7 days before the procedure”. On that of course is Coumadin, Plavix and Aspirin, all three of which I am taking, and the procedure is less than three days away. And if that isn’t enough. No solid foods on Sunday. Broth, and clear liquids only. I take insulin. If I don’t eat some carbohydrates, will that crash my blood sugar? I really need to call some folks tomorrow.

Saturday morning, I retrieved all of the phone numbers I needed and began calling. First up, the Endocrinologist. I will tackle the insulin issue first. Of course, being Saturday morning know body is at work. The answering service connects me to the nurse on call. I explain the situation to her. She is very calm, and very helpful. Test my blood every two hours on Sunday. Drink apple juice if my sugar gets too low. Sunday night, skip the dose of insulin. Fair enough. On to the next call. Again, the answering service answers the phone. Again, I get connected to the nurse. Unlike the diabetes nurse, I knew this guy. He is one of the RN’s at the transplant hospital. I explain what is ging on. We cannot postpone the procedure. Too much is riding on it. After some discussion, he tells me to stop all three medicines, including the Plavix. I tell him, “that sounds good, but you know that if I stop the Plavix, I cannot re-start it. He says stop it and I explain again that I am allergic to Plavix and it was only after a day in ICU and going through a de-sensitizing procedure that I was able to take it. Again, he says stop taking it.  At first, I am leery of his advise. I wonder “does he really understand what is going on here?” Then I realize: he is part of the team of people who will remove my old heart and slap in a new one. If I cannot trust him, then what the hell am I doing there. I take a deep breath and decide to trust him. “OK”, I say and hang up the phone.

Sunday went without a hitch. There were a couple of times that my blood glucose levels began to drop. A little apple juice and on I went, in search of that squeaky clean colon. I got up early Monday morning. We had to drop off the 24 hour urine buckets and get more lab work done before the procedure.  Crap!! I forgot the urine at home. Oh well. We’ll just drive out – again tomorrow to give them the urine.  We still needed to give blood. We took care of that, then walked to the Gastro office. It is in the same building. Very convenient.  The appointment was for 10 A.M., but the instructions said to get there an hour and a half early. I could go on to tell you how they messed up getting a catheter in me two times, and that I gave them an ultimatum of three times and I am out of here, but I won’t. The procedure went without a hitch. They did find several pre-cancerous polyps, which were promptly removed. This is the second colonoscopy in a row where pre-cancerous polyps were found. The doctor says that, while I am fine now, I must endure a colonoscopy every three years. Apparently I am a high risk for colon cancer.  After an hour of so in recovery, we went home.

Wednesday went well. My weight was holding steady at 218.6 pounds. Was I low because of the colon thing a few days ago? I don’t know, but it made me happy to see I was making progress. Around 2 P.M. I get a call from the transplant doctor’s office. It was Dee, one of the scheduling nurses. She reviewed the results of all the tests that were run this past week. Everything is alright.  We are on track to be discussed at the committee meeting on Feb 14th. Feb 14th, I ask? I thought you said the next week. She apologized. The meetings are held on the 2nd and 4th Tuesday of each month. I would have to wait an additional week to be listed. That kind of let the air out of my balloon, but Denise said, “that just added one week to your life expectancy after transplant”. Got to hand it to her.

All seemed to be going well until last night. Denise and I had just finished dinner and were sitting down relaxing in front of the television. My heart began beating very fast. I grimaced in a way that alerted Denise. I could not speak. As I held one hand on my chest, the other hand in the air motioning Denise to wait, my heart danced around faster and more  erratically than a fire walker with diarrhea. I was frightened that my defibrillator might go off. I took in several slow deep breaths and tried to calm myself. After three or four tense minutes, my heart finally rested. A reminder of the situation I am in seems to present itself every time I let my guard down. Oh well. At least I did not receive a shock.

I teased you with a “denervation” discussion, but the blog entry today is already very long. Next week looks quiet. I will talk to you about that next week.  Yes, this week was a busy one. I get tired just thinking about it. But, I am still around to talk about it. When my home health nurse asked me to set weekly and daily goals for myself, I told her that I only have one goal. “STAY ABOVE GROUND”. That’s it. Denise, as always put it perfectly when she told me that every day above ground now, is an extra day I can live after the transplant.  Gotta love her!

For information on me, and my journey with heart disease, go to my web site.  http://www.brianhayden.com/

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